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新生儿筛查诊断的 10 岁先天性甲状腺功能减退症患儿的健康相关生活质量和自我价值感。

Health- related quality of life and self-worth in 10-year old children with congenital hypothyroidism diagnosed by neonatal screening.

机构信息

Pediatric Psychosocial Department, Emma Children's Hospital AMC, A3-241, P,O, Box 22700,, 1100,, DE, Amsterdam, The Netherlands.

出版信息

Child Adolesc Psychiatry Ment Health. 2012 Oct 3;6(1):32. doi: 10.1186/1753-2000-6-32.

DOI:10.1186/1753-2000-6-32
PMID:23034129
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC3520758/
Abstract

BACKGROUND

Much is written about cognitive and motor development; less is known about social and emotional consequences of growing up with congenital hypothyroidism (CH).The objectives of the study were: (1) to compare health related quality of life (HRQoL) and self-worth of 10 year old patients with CH with the general population; (2) to explore associations of disease factors, IQ and motor skills with the outcomes.

METHODS

Children with CH and their parents completed several questionnaires. Patients were classified to 'severe CH, n = 41' or 'moderate/mild CH, n = 41' based on pre-treatment FT4 concentration.Differences between CH and the general population were tested by analysis of covariance and one sample t-tests (mean scale scores HRQoL and self-worth), chi-square tests and binomial tests (% at risk of impaired HRQoL and self-worth). Linear regression analyses corrected for gender were conducted to explore associations of the outcomes with disease factors, IQ and motor skills.

RESULTS

Patients with CH reported lower mean HRQoL on motor, cognitive and social functioning, and on autonomy and positive emotions (p < 0.0001). Patients were also more often at risk for impaired HRQoL and self-worth. No differences were found between the severity groups. Lower IQ was only significant associated with worse cognitive HRQoL. Initial FT4 plasma, age at onset of therapy, initial T4 dose and motor skills were not significantly associated with HRQoL and self-worth.

CONCLUSIONS

Negative consequences in terms of HRQoL and self-worth are prevalent in children with CH, independent of disease factors, IQ and motor skills. Physicians should to be attentive to these consequences and provide attention and supportive care.

摘要

背景

关于认知和运动发育,已有大量文献报道;但对于先天性甲状腺功能减退症(CH)患儿成长过程中的社会和情感后果,了解较少。本研究的目的是:(1)比较 10 岁 CH 患儿的健康相关生活质量(HRQoL)和自我价值感与一般人群的差异;(2)探讨疾病因素、智商和运动技能与这些结果的相关性。

方法

CH 患儿及其家长完成了多项问卷调查。根据治疗前 FT4 浓度,患者分为“严重 CH,n=41”或“中度/轻度 CH,n=41”。采用协方差分析和单样本 t 检验(HRQoL 和自我价值感的平均量表评分)、卡方检验和二项检验(%HRQoL 和自我价值感受损风险)比较 CH 患儿与一般人群的差异。采用线性回归分析校正性别,探讨疾病因素、智商和运动技能与结果的相关性。

结果

CH 患儿报告在运动、认知和社会功能,以及自主性和积极情绪方面的 HRQoL 较低(p<0.0001)。患儿也更有可能出现 HRQoL 和自我价值感受损。严重程度组之间无差异。较低的智商仅与较差的认知 HRQoL 显著相关。初始 FT4 血浆浓度、开始治疗的年龄、初始 T4 剂量和运动技能与 HRQoL 和自我价值感无显著相关性。

结论

CH 患儿存在 HRQoL 和自我价值感受损的负面后果,与疾病因素、智商和运动技能无关。医生应关注这些后果,并提供关注和支持性护理。

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